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Autoimmune diseases bring a whole different set of problems. There's no reason to try and deal alone. Why not be in it together?
We would LOVE to feature your stories and opinions- email us at contribute@thefaceofarthritis.com !

Tuesday, December 8, 2015

New Beginnings

Its been a month since my last post, and I've been trying to settle into my new job. I don't know if you can tell from the photo, but I think I might be blending in nicely. And I'm feeling so much better. I mean, I'm still not going to Zumba or Fusion anytime soon, but improvement is improvement no matter how slowly it happens.

I really am amazed at how differently my mind and body feel being in a new environment. 

Sunday, November 8, 2015

I thought finding a husband was hard...

... as it turns out, finding a friend as an adult is harder. It used to be that you just found one or two people in your classroom to be friends with and then your #SquadGoals could begin. Now, if you create a real friendship with someone at work that's great, but other options for meeting new people are few and far between. (I guess you could go to a bookstore and try to pick someone up friend style in your favorite section. I think that is sometimes referred to as "creepy", or "stalkerish".)
You could try joining a fandom, too. 

This is complicated by the fact that my fatigue/pain/unpredictable invisible illness make me kind of flaky. Sometimes really flaky. Like, who actually looks at the forecast before making plans, because if a low pressure system comes in they won't feel like doing it? Well, some of us have to. Rain doesn't just mean  switching to indoor activities for me, it means there's a chance I won't feel up to doing ANYTHING other than a no pants no dance party on top of my electric blanket. It is a very real part of my life.

That's really, really, really hard for people without endurance problems to understand. And I have found on many occasions there are people who initially think they can deal with the random bail outs, the preferred text sessions to hang outs, the annoyingly illness centered conversation. But a lot of those people, understandably so, can only handle so much. And then they start to fade away.

In my opinion, that shouldn't reflect on you.  Don't get me wrong, whenever it happens to me I become a despondent loon because I'm just sure this is a sign that I am not really sick, otherwise, wouldn't people stay and be there for me?  (There's also that snag of your personality also playing a part in whether people can't stand you. If that is why they start pulling away, I have no absolution for you. Don't be a dick.) But on the whole, you have to realize that what you consider normal ("They only had to draw 2 vials of blood today instead of 5!") is depressing and a downer for most other people. It saps their energy in a way that you probably have become blind to, because, like all the shirts at Hot Topic say, normal is relative.

I have no advise on how to fix this. You can limit how much you talk about your health with people, but then you don't really have a two way friendship, do you? I think the best I can tell you is to be guarded with yourself, don't take it personally if what you consider a discussion of your current day is too much like whining for someone.

And again, if you have the personality of a dick, then maybe check yo' self before you wreck yo' self.

Tuesday, November 3, 2015

Don't Cry For Me Argentina...

... The truth is I never left you.

There is no problem so great that a little Supernatural
can't fix it.
I mentioned that it was a long, hard road. That, my friends, was an understatement.
I gave you the sugar coated version of how it transpired that I started working full time again, and I think its time I was open about exactly how it went down.  I explained it as not being "malicious" or "ultimatum-y", which was not entirely true. No, they were not malicious, but the exact words were "We have 2 open tech positions and 3 very qualified applicants all willing to work full time. We wanted to, of course, give you the opportunity to take on that full time position before offering it to them, because you are a valued member of our staff."  That sounds an AWFUL lot like "either you go full time or someone else gets your job who will." I guess I've never looked up the actual definition of ultimatum, but it seems like that must fit the bill.

And the truth  of my life is that since I went full time I have been kind of miserable. Actually, mostly miserable; Because I have such a shitty reaction to my meds, I have to take them when I won't have to work the next day. So if I'm working 5 days straight a week, and I have to give up 1 day to side effects then that means I only have 1 day to get all my shit done. So when does that leave for my body to recuperate?

Never. The answer to that question would be never.  And that caught up to me. Don't get me wrong, I truly wish with all my heart that I could work full time. The paycheck is way better, and you don't realize how boring laying at home alone all day is until you've had to do it repeatedly. Although, on the upside, I have read like seven or eight books thanks to all of that exhaustion. But that great paycheck doesn't help to  pay off the debt to my body.

So despite how much I love my office, my doctors, I had to make the difficult decision to put in my notice. Once I had an offer from an office that could give me part time, I went to the office manager and made it simple; They had been considering letting those of us who wanted to go part time actually do it, so I asked where they stood on that decision. He said he would have to get with the head tech and talk about it. So I sat down and calmly told him that I had an offer from another office who could accommodate me. He said he would talk to the tech that day and have an answer for me. That answer was, not surprisingly, a big old "enjoy the new digs!" (I mean, not literally. Obviously I've taken creative license with his words there. I don't for the life of me remember what exactly was said, but the end result was that they didn't want to keep me.)

It's kind of like a divorce; I still love the doctors, I wish it had worked out, but love doesn't always conquer all. And the truth is that I live with a degenerative disease, which means that over time it will only get worse, but I can influence how quickly that happens. So now I'm on to bigger and better things. I hope. It's so scary to try something new.

As a side note, one of the other girls who was given the letter about part time that I received was told she could go part time the day after I put in my notice. How quaint and not at all obvious.

Saturday, October 10, 2015

It's a long, long, road

I want to apologize. I have been so absent. Absent here, on Facebook, on Tumbler. Life has been hard. Working full time has been very difficult on my body. Most days I come home and just lay down. I barely have the energy to read, or watch a new show.

It really gets to you after a while, makes you worry about what the future means for you.  Will it get better, will I eventually get back to living like everyone else?  Or am I always going to find myself constantly having to change this or that or the other in order to accommodate the whiny needs of my body?

Awfully disheartening.

Saturday, July 25, 2015

Unrelated: FOUND!!

Thank you so much to those who shared and tried to help us last week. Autumn was found and is safe as if Tuesday (sorry, I was out of town and didn't update you as quickly as I should have. I suck.)
The family appreciates everyone so much. Thank you again.

Tuesday, July 21, 2015

Unrelated but URGENT

Devoted readers and pain sufferers: I am making a personal plea today for you to please try to help us. The daughter of a close friend has gone missing and we are desperate to bring her home safe. She is only 15 and has had mental and emotional issues in the past. She NEEDS to be in a safe environment, NOT on her own depending on strangers.
Her name is Autumn Sky, but she prefers to be called Sky. She is 15 years old, about 5'7" and was last seen with blonde hair, but may have dyed it at this time. Attached is the Facebook page to help find her, which has information about last known whereabouts, possible accomplices, etc. We ask that you share the page, as a person can get pretty far in 48 hours and she is most likely trying to get out of our area.
PLEASE if you have ANY information post to the Facebook page and/or call your local authorities immediately. She is registered as a missing person nationwide.

Thank you for taking a moment to indulge this request.

Sunday, July 19, 2015

Sometimes a hurdle looks like Mount Everest

Everything is relative. Most people don't know the little joy of being able to underline something with a straight line if their hands don't shake. (And they will look at you with their judgey eyes if you squeal with happiness when it happens.)
So it is hard for people who don't deal with chronic pain, chronic illness, chronic "I want to, but I don't have the energy" to understand how warped my world is compared to theirs.
A while back I wrote an article about not being able to treat toe fungus because it would stress my body too much with my other medications. That was the first time I had ever been told "we can't treat this because you're sick" and it was a painful blow.

I think we all know in the back of our heads that there will come a day when our illnesses will interfere with daily life, medical care, or career. Yet, when that day comes, it is still like having someone say "what's in you're ear" and then cut it off to look inside instead of just leaning in. It hurts, its surprising, and it feels ridiculously unfair.

And now, folks, I find myself on a precipice in my career. If you've been a long time reader, you might remember that I was given the opportunity to work 4 days a week instead of 5 after I had an especially bad flare. It was such a blessing, and it drastically cut the amount of sick days I was using. But, as businesses do, our business has grown, and with that comes a need for more man power. Which means there is no longer room in the practice for "part time" or "less time" workers.
We had "the talk" last Friday, and I was wrecked. Do not misconstrue this, though, nothing was malicious or ultimatum-y or anything. But I was blind sided by it, and completely overwhelmed. I still felt like shit. My lab work came back abnormal last time and I had to go back for additional tests. I was exhausted all the time, I didn't even have the energy to shop. Like, not even for makeup. I don't have the energy to go to ULTA which means that something is seriously off.

My mind was a jumble. I felt awful, I'm not sleeping soundly. I usually take my methotrexate on Tuesday night, knowing that I can rest on Wednesday. I make all my appointments on Wednesday so I won't miss any more clinic. I had been planning to go back to school, to get prerequisites fulfilled for grad school. That certainly couldn't happen on the current course if I went back to 5 days a week. So much would have to change. And what if I got sick again? Then what would happen?

You all know me, though, and of course I'm going to try. You never know until you try, and who knows- maybe this is just a hurdle and not Mount Everest. Maybe jumping this hurdle will be the kick in the pants my body needs to get its shit together. Maybe it will make things better.

It's so easy to only see things in a negative light. But if I- if you, if any of us- give in to the temptation to do that, then it's a slippery slope to nothing but darkness. So I am choosing to think of this as an adventure.

Besides, people have climbed Mount Everest and survived, right?

Why would I go on a diet? I'm fucking fabulous!

I mean, ok if I'm being totally honest with you all (which why the hell would I put the effort into getting a blog and then NOT be totally honest in it?) I do, in fact, need to lose some weight.  But as long as I fit into my clothes well enough, then I have a hard time using that as motivation to diet and exercise. However, pain is one of the best motivators for anything. And the idea that a change in diet would improve my pain levels and reduce the amount of pain relievers I need to take, then despite my love of crappy food I have to at least give it a try. After all, I can't actually complain about a diet or turn my nose up at it without having tried it first.
So I'm going gluten free.
And I want you all to know, this is very hard for me. Everything in my house was whole wheat. Bread, chips, bagels, all of it. I was in LOVE with gluten. Yet, so much of the research, and so much of the personal testimony, shows that gluten can increase the amount of inflammation overall in the body and exacerbate the pain of RA, PA, OA, or whatever kind of A you have. It can also be an irritant to gastrointestinal problems like IBS or Chron's. So I did it, I ditched the whole wheat, whole grain everything and started looking for the labels with "Gluten Free!" on it.
Let's talk about the fact that anything with a "gluten free" or "organic" or any other health craze catch phrase has at least a $1.00 Zeitgeist tax on it.
Seriously?
I added it up one week and it would actually have been significantly cheaper to eat breakfast, lunch and dinner at McDonald's dollar menu for the entire 7 days than to pay for the entirely gluten free, trans fat free, no preservative, no additives from the Mars rover groceries I had purchased.
I don't know if you're familiar with the Supernatural
fandom, but we have a meme for everything.
No wonder we're a nation of Type II Diabetics with chubby children; we have become so financially dependent on artificial sugars and over processed flour that our bodies don't know what to do with the food we're putting into them.

So WHY WHY WHY WHY WHY are we dragging our asses on demanding that quality food be affordable on a living wage?? Have you noticed what products have the WIC stickers on them? I'll give you a hint, it isn't Dr. Praeger's spinach pancakes.
Whoa, that got political really quickly. That's ok, that's where I was headed anyway, I just got there a lot faster than I anticipated. And please realize that I understand WHY it is cheaper to buy shit than not. All of those factories pounding out our prepackaged, premade foods are getting bangin' sweetheart deals with the producers of the ultraprocessed wheat flour that barely resembles wheat in any way shape or form. So when they make something that is gluten free- read as: made with rice flour or corn flour- they lose that cheap supply and have to go somewhere else for their flour. That place doesn't get much business because the Super Wheat's have eaten up all the major business opportunities, which means they have to charge more per unit for their flour than SuperWheatCor or whoever it is making that fake flour is charging. That means that, in order to not cut the profit margin on the individual units of product being sold, the producing company has to hike the price to reflect the change in their cost of production.
But is it equivalent? Are they only hiking it by how much more the flour costs? Or are they taking this opportunity to slap that Zeitgeist tax on everything, knowing that half the people buying it have no choice (Celiacs patients, for instance) and a third of the rest don't know any better. The other 2 thirds of that remainder are like me and know its happening, don't like it, but prefer life withthout SuperWheatCor inside our cabinets.

OK let's take a step back from the political fire I just lit. Leave it over there, don't touch it kids. Let's instead focus on what I found physically after cutting out gluten.
I felt better.
Fuck me if I didn't want that to be the truth, but it is. At the suggestion of my nutritionisty friend I switched everything and- especially after seeing the price tag- I didn't want it to be as obvious a change as it was but... well, God is mean sometimes. And after a month of doing that we then had to deal with that heinous move, so of course the diet structure went out the window and I went back to shitty fast food, Stouffer's, and Eggo's. Can you guess what happened then?  Very good, Dora, I felt like shit.
Now I'm kind of half on the wagon, half hanging off repeatedly hitting my head on the big rocks as they roll under. I've replaced a lot of things again with gluten free options, but I also have not been as strict on myself about eating out (most fast food places the only gluten free option is the one with no baked products involved. Salad. Salad is your option.)
So would I recommend it? Yes, if you can afford it. I think its at least worth a try. Like anything, it won't work the same for everyone. Some people have life changing differences in health, some people are like me and just feel better but not perfect, and some people notice no change and have a huge hole in their wallet to boot. But you can at least try it. Pick a month that won't be stressful for you, without moving across state lines, for instance, and just make the switch. You don't have to throw everything out, just put it all in one cabinet and don't touch it. Replace it with the gluten free alternative and see how it goes. If it is life changing, you can give away the other food at work or to a homeless shelter. (Unless its open. But I bet you could find a homeless person who would take it directly, open or not.)
It isn't for everyone. But if it is for you, isn't that so much simpler than having to take more ibuprofen/Tramadol/narcotics of any kind?

Yes.

Tuesday, July 7, 2015

#TuesdayTwosies

Representing our love for Lake Placid NY!!  And a little bit of dorky got out somehow,,,,

Holy tick-tocks, Batman!

My clock shows that it it 12:44 AM central time on Wednesday 7/8/15. And I'm still awake. Thank God I don't have to work tomorrow.
So why am I still awake?  Why, its that refrain that I'm sure y'all are as sick of singing as I am: I'm hurting.  Jesus Christ, when does this song end? I already tried the ibuprofen. The Tramadol. A xanax to make me sleepy. Finally an Ambien as a Hail Mary. Yet I'm sitting at my desk typing this message to you guys. When do I get an effing break???? Truly, this is maddening. At least this time I decided to be productive (in the relative sense of my life.) instead of laying there thinking "maybe just five more minutes. Maybe the eucalyptus lotions I slathered on to help the pain will relax me as well.

If nothing else, I'll look terrible tomorrow but smell FABULOUS!

Saturday, July 4, 2015

Friday, July 3, 2015

#FlashBackFriday

#FlashBackFriday to when my poochy was an itty bitty baby terrified of his first experience with water! #fbf #CoonhoundsOfInstagram #BoxerCoonhoundMix #BoxersOfInstagram

Wednesday, July 1, 2015

#WomanCrushWednesday

Our #WomanCrushWednesday this week is Jennie Garth, best known for her roles in 90210 and a bunch of Lifetime movies that we promise we didn't cry over. Her daughter, Lola Ray was diagnosed with JRA and Jennie has been a stellar mom, exactly what any child needs when learning to grow up with these different challenges.
Bravo!

Wednesday, June 3, 2015

Get your shit together

... I'm sure that's what you've been thinking in my general direction lately. I've been so absent. I've been posting things to our Tumblr, Facebook, and Twitter here and there from Instagram, but other than that I've been such a terrible blogger.
Moving is exhausting. And you would think it would be over by now but it isn't. We still don't have all of our stuff out of our lousy old apartment. We still have more crap to get out of there, and then have to clean it. This is fucking never ending. And I'm sure you all can understand- whenever you get one load of stuff moved, it seems like what was left has been reproducing while you were gone and there's more than there was to start with.
And all of this shit is TERRIBLE on your body! Even the healthiest person on earth will be stressed, exhausted, and borderline miserable with moving. No one can deal with picking up endless boxes of junk and hauling it up and down stairs without their body getting a little pissed about it. (Imagine moving as "overtime" for your body- it complains just as much as everyone in your office does.) But if your body is already pissy, then there is a fabulous chance it will throw a temper tantrum once you start doing any of this crap. And it sucks, because you can't exactly STOP in the middle of a move. Most of the time you have to be out of a place by a certain date. We inevitably don't plan far enough in advance to be finished packing the night before the movers get there. This time we were lucky enough to have 2 weeks in both apartments; usually that isn't the case.  How much does it suck when you have 3 days to move EVERYTHING??
And then there is the DIET when you're trying to move. You never feel like making food, it feels like ages to nuke anything that takes longer than a Hot Pocket. So we all eat fast food. We don't try to balance protein and carbs with the amount of calories. All we want is comfort and sustenance, whatever it comes from.  So on top of our bodies being mad about the extra work, we're also depriving them of the real nutrients they need to survive. I mean, who needs, like, basic nutrition to function, right?
What about the poisons we call medicine around this joint? They can make you feel like a power cord discovered by a puppy- how are you supposed to pack and move with that shit coursing through your system??  I decided to skip a week of Enbrel in order to feel like a human for the move.  But of course, without the drugs my body begins to revert back to its natural "why not attack myself" state. And then I end up feeling like shit anyway. (The next post is going to be about the simultaneous debacle that is still happening with the Enbrel, but we'll get there.)

What have y'all done to deal with the stress- mental and physical- of moving? Do you ever tread the line of skipping medications (which I should say, is probably a terrible idea and should never actually be done without talking to a doctor), or try to plan around the bad days? And do you experience the feeling of a mini flare during or afterwards, because I sure as hell do.

Saturday, May 23, 2015

I'll be beautiful if I want

Wearing heels for the first time in a long time- bets now being accepted on how long this will last.

Monday, April 27, 2015

Excuse the flaky timing...

Life under construction

... we're currently in the process of moving from one apartment to another (and not in New Jersey as previously expected, le sigh) and things have become a bit of a scramble around here.
But don't worry,  I'm writing in my journal whenever I have a blog idea, I'll have plenty to write about whenever I have the chance to sit down at the computer.
So bear with me for a bit.  And keep giving me ideas for what you want to hear about!

Wednesday, April 15, 2015

Continuing to make your phone smarter







Noom

Price: Free or $$$ (Paid Subscription)
So this one can either be free, or be a paid subscription. It is a combination "get fit" program, which combines food tracking with exercise management, it even has a pedometer built in. With the paid subscription you get a "coach" program out of it which looks at what your hopes are (lose weight, eat better, etc) and gives advise and goals for each day to help you get there. There is also a "groups" feature included where you can join a "support group" of people with similar goals and lifestyles as you, and share your progress and chat.
You can tell that I'm not allowed to carry my phone at work.
 And that I was bad with choices in foods today.
No judge?
My number one favorite thing about this app is that while it does ask that you watch your caloric intake, it does not focus on that number. Instead, there is a pie chart of green, yellow, and red foods. Each food you eat (many store bought or restaurant options are already in the database with their information logged) is assigned one of these colors, and I bet you can guess what they mean: green foods are an all you can eat option; yellows are OK in moderation, but have something about them that needs to be monitored, such as sodium or fat content; red is obviously a food you really shouldn't eat much of at all. So although you have a calorie goal for the day (which it adjusts if you track exercise for the day, giving you more calories) it stresses the need for those calories to be spaced over the color groups in a certain percentage. The calorie goal itself is based off of how much weight you want to lose, how quickly, how much you weigh currently, how tall you are, and all of that awesome index stuff.
So theoretically, I am going to walk on Wednesday,
and do Yoga on Thursday.
You can create a schedule for your exercise in the app as well. So you can tell it Monday is a Yoga day, and you want to work out at 6:00. An alarm will go off at 6:00 (or earlier if you want advance notice) reminding you that it's time for yoga. If you don't log the workout, you get a mark and it will show you on your calendar that you missed it. You can also log a workout later if you forgot to tell it you were working out, or if you didn't want to hold your phone while you lifted weights or something. You literally get bonus points for unscheduled workouts.
Everything in this app that deals with calories stresses that approximation is key. They are really trying to make you focus more on that pie chart (omg pie, yum) and less on the numbers on a scale or in a food index. I love this because, if you're eating healthy and the way you're supposed to, then the majority of people will end up at their ideal weight. And by ideal I of course mean "naturally ideal" not, "I want the scale to say 120 pounds before I get married or I'll die." This app is all about helping you fix your health, not your scale.

Sleep As AnDroid

Price: $
So this one is only free for 14 days, but I think its worth the little bit of money. It tracks your sleep patterns by monitoring the movement on your mattress (omg cue the corny sex joke, please.) You can also set it to record on the microphone all night, tracking when you snore or talk. The software is able to distinguish the difference and marks places for you on a graph showing how often you did either, then you can listen to see what was going on. This is especially awesome if you have sleep apnea because you will be able to see how often you stopped breathing. It lets you see the sound graph next to the graph of what level of sleep you were in, so you can see when you're snoring more.

Obviously it isn't 100% accurate. For instance, it doesn't register me as "awake" at any point during the night, only "light sleep". I even tried picking up the  phone and carrying it with me to the bathroom, but it still only said "light sleep". I don't mind it because I can estimate which places I was awake for.


Randoms

AccuWeather's Surface and Jet Stream Map
Hell, I hate proving my meteorology professor right.
Price: Free
So this isn't an app, but it is still an integral part of my smart phone life. It shows where the pressure systems are and how they are projected to move over a 72 hourish period. I know that not everyone is sensitive to barometric changes, but if you are, this  is a lifesaver. I can tell you 95% of the time whether there is a low pressure system near by. The other 5% I don't bother looking it up to confirm.
The reigning theory on Arthritis-Patient-As-Barometer is that when the surface pressure is low there is less external force holding joint tissue in place, which means you may swell more or feel more discomfort because your joints are like teenagers who just got a driver's license. Along the same vein, a dramatic change in pressure can cause discomfort because the joint tissues can't acclimate quickly enough. So even if a high pressure system is moving in and you should feel better, if its moving quickly you might feel it until the front has passed.
Obviously this website won't fix anything for you, but you can at least be prepared. Also, predicting the weather and then proving to people you were right is a neat party trick.

Remember to send any suggestions to contribute@thefaceofarthritis.com to be featured in upcoming articles!

Tuesday, April 7, 2015

Make your smartphone your smartest asset.

I say all the time that I see a lot of geriatric patients. And so many of them don't have smart phones- they say they don't need all that extra stuff and they won't succumb to it.  I totally understand that it can be kind of overwhelming and may seem like a bunch of stuff you don't need, but that isn't because of your age.  There's a ton of stuff on mine that I don't need, and there's exponentially more available in the app store that I wouldn't know what to do with if I even knew it existed. So you can't really tell me that its "too much" for you.  The beauty of it is that you can make it exactly how much you need.
And so, since my mother always taught me to share, I'm sharing with you the best apps I've found for dealing with the day to day of our complicated lives. 

Life organization
Sometimes it's hard to keep up with all of the pieces of  life. Even without chronic pain, or lack of sleep,  or wicked strong poisonous medications a person can end up seriously overwhelmed. For that, I use a couple of things.

Evernote
Price: Free or $$ (premium subscription)

I've been using Evernote since I got my first smart phone.  The app  is just plain amazing.  You can create lists, or text documents. You can take photos and store them in a document. What is truly awesome is that you can create tags for your stuff, so you can tag a photo of a drug bottle as "meds" and then when you're at a doctor's office, just pull up all of your documents tagged "meds" and there they are.
Or, you can create notebooks. So I have notebooks for everything from work, to medical information, to blog notes. What I love is that it creates an easy to interface environment- all of my allergies, past surgeries, current meds, etc are listed with easy access so if something happened to me all my husband has to do at the hospital is pull up the notebook for my health information.

Google Keep
Price: Free
Oh. My. God. This is the mecca of organization tools. At its heart it is a classic digital post it style app. However- Google has taken everything to the next level.  There is your standard color coding option, to make it visually easy to see what your to do list looks like. But they have added the ability to add tags as well, which once again means it is easy to find all notes pertaining to what you are looking for. 
Notice the tags at the bottom right corner of
each, as well as the icon that indicates the
note is shared on the "DO TAXES" note.
The red icon of a red blobby thing (I don't
have my glasses right now) is his icon
and means that he has the ability to edit
this note.
My favorite feature, however, is the reminders. Many digital post it apps have started allowing remi
nders to be set like  alarms to go off at a certain date or time. But with this app Google has integrated your GPS, meaning you can set reminders FOR A SPECIFIC PLACE. So if I keep forgetting make up remover when I go to Target, I can make myself a note when I remember (usually right when I get home) then set it to go off the next time I'm at Target. And lo and behold, the next time I walk into Target, my phone beeps at me with a message saying "Go get your make up remover, stupid!" (I'm not very nice to myself in these notes.) So if you're like me and seem to forget that you had a list for the grocery  store, you can set a reminder and when you walk in- BAM, you won't forget any more. (Also handy is making a note for the time I get off work, so I'll remember to actually go to the store, bank, whatever.)

Health Organization
MedHelper
Price: Free or $ (Paid)
I wish I had had this app in college. (I wish smart phones had existed then too but, whatever, time travel.) It is exactly what it sounds like: you put in your medication with as much or as little information as you want. You can set a

reminder to go off when you're supposed to take it, and you check off whether you took it or skipped it. Which is amazing if you sometimes can't remember if you already took your Lyrica or whatever. And it can be a lifesaver for those weekly meds that I often forget about until days later.
Note the tabs for "Schedule", "Inventory", and "Contact".
When I say you can put as much or as little information in there, I mean that. You can put in your dosage, how often you take it, who the prescribing doctor is, what your preferred pharmacy is, even what the refill number is. You can put in what quantity you get at a time (like 30 pills for a daily med), and it will remind you when you are getting low. You can put how many refills it came with, and if you mark it each time you refill it, it will update your supply, and warn you when you are out of refills. This feature is awesome for PRN meds like tramadol, opiates, xanax, etc
I can't even imagine how much better I would have been about taking my birth control in college with this thing.


Next time we'll look at some more health organization choices, as well as a couple of other random treats!  In the mean time, do you have any suggestions for fellow readers? Submit them at contribute@thefaceofarthritis.com and I may feature them in the next post!

Wednesday, April 1, 2015

Truth.

So it turns out my car's battery was only running at 1/3 its capacity. And that meant I got to drop some serious cash for a new one: now its back at full capacity.

Where can I go to get one of those for myself?

Thursday, March 26, 2015

Have you ever heard of a drug holiday?

I guess that could actually be two things.  I am not talking about going on a long binge of illegal substances to pretend like you don't live the life you live. I mean, if you want to do that, you be you.
But no judge if this is your thing.
What I'm talking about is going off of a prescribed medication for a period of time, to test the efficacy; to see how your symptoms are without it. So, you could say that's what I've been doing lately with my methotrexate. I mean, what was ACTUALLY happening is that when I briefly saw a different rheumy the proper blood work did not get drawn, so my regular rheumy couldn't ethically refill it until she saw me and ran labs.  I get that, you have to be careful with these poisons we're on.
The result of this mix up, however, was me not being on MTX for about 4 weeks.  And trust me, I'm feeling it. Which is actually a good thing.
It acts as a reminder that my symptoms are real. Sometimes after a period of time on medication, with things moderately controlled, symptoms can dissolve into the back recesses of our mind. I, at least, can become paranoid and wonder if they were all in my head to begin with.  What if I'm not sick? What if I was just whiny and didn't know how good I had it? Or what if it was just a short term thing, like maybe I just hurt myself? Everywhere...
No, any time I end up without medication for a while, all of those questions become clearly silly when I'm gulping down ibuprofen just to get out of bed. And you know what? Thank God. If it weren't for a rare reminder, I may go crazy wondering if I'm even more of a hypochondriac than I initially thought (I should never be working in the medical field. Hindsight is 20/20. I should know, I test vision all day.)
Do you ever stop your meds, or like in my case, find yourself between refills? Do you find some emotional relief in the justification for taking the medicine? Or do you have confidence in your diagnosis even when you're feeling good?
I think I was told for so many years that my symptoms were "in my head" that I can't help but still hear a little voice saying the same thing. I have a very strong suspicion that it is the "little green man" who sat on the edge of my cup when I was playing Circle of Death.

Monday, March 23, 2015

Looonnnggg night

Its going to be a long night of storms moving in and pressure systems stalling on top of us.
Here's a punny joke to help pass the time.

You know what? I don't even need sheets.

I made the bed yesterday. THAT was an ordeal.

Sometimes I feel like my fingers are no longer attached to me.  Like, instead of giving orders via the nerves, the brain is calling them on their cell phone and the reception is shitty.
For my brain, making the bed is easy. You see the sheet sitting there. You reach out your hand and grasp the sheet. You position the corner of the sheet over the corner of the mattress. You walk to the next corner. You grasp the sheet, you stretch the sheet to the corner and secure it. Repeat as necessary for however many corners your bed might have (I don't know how to make a round bed.) But THEN you put MY hands in the equation and they turn into the equivalent of :

For me, that's the must frustrating part. I know HOW to make a bed. These same fingers (that's an assumption that there have been no alien abductions with transplants that I'm unaware of) used to make a bed just fine (my mother would tell you it was my mouth that used to be the problem.) Yet now it feels like trying to place a radioactive pin in someone's brain while wearing lead oven mitts.*

* I should probably watch less
Grey's Anatomy
It doesn't help that I spent most of the weekend in pain. Whether it was weather related, or my body playing tricks on me I have no idea, but I just hurt all around- neck to elbows to knees to toes. It's so strange the weird things that you find yourself challenged by.  Ten year ago I never would have thought anyone needed help making the bed. Now, even typing this is a struggle.

Sunday, March 22, 2015

The Dread Pirate Harrison
So if you follow our Twitter or Tumblr, you have no doubt seen lots of pictures taken at the Alamo Drafthouse here in town.  The beauty of this theater is that they show classic movies all the time.  Since January I have been to see Mean Girls, Moulin Rouge, The Princess Bride, Fear and Loathing in Las Vegas (I am, I think, Hunter S. Thompson at heart), The Boondock Saints, and Fight Club (don't ask me to talk about it.)   Some of those, like Mean Girls and Princess Bride were quote a longs, and Moulin Rouge was a sing a long.  We got fun props like tiaras (I mean, it's just... plastic) and blow up swords (I'm not left handed either.) to use on cue during the movies.  They do drink specials themed for the night, and everyone has an amazing time.  (For Boondock Saints everyone got cap guns and shot them whenever they shot people in the movie.  I was, like, deaf by the time we left.)
This costs about the same as a regular movie ($9-$12 dollars here, I don't know if it varies from city to  city), and is the only time I've gone to the movie theater since... the last Paranormal Activity came out.  Whenever that was.
Movie theaters are kind of one of my least favorite places.  A) there are often children there, which I generally try to avoid.  B) I have to sit in a seat which was designed for the comfort of someone taller than me, for about 2 hours.  By the second half of a movie my hips and knees are killing me, I have a crick in my neck from that stupid "head rest" (it does not reach my petite head. That's a lie, my head is not petite; I have an extremely jutting occipital shelf, which hurts when I press it against a headrest for long periods of time.  It is a burden, truly.  My life is so hard.)
This is why I am not a huge fan of paying more than $10 for a ticket to a new movie that I may or may not like, and sitting there for 2 hours desperately wishing I could pause the thing and walk around for like 5 minutes just to not want to punch someone in the face.  (This is an even bigger problem if I have to sit next to strangers.)
"A piece for Gretchen Wieners"
So, when my friend showed me the Mean Girls quote a long, I was like, "Cool, I love that movie and I can totes sit through it for the whole time.  Especially at a theater that serves alcohol."  Then we found the Moulin Rouge sing a long, which is both one of my and one of her favorite movies of all time.  We both cried. Multiple times.
That was it, I was hooked.  Here was a theater that showed all my favorite movies, all the movies I quote on probably a regular basis, AND they serve alcohol at the same time.  Did I mention they have a full kitchen?  A DELICIOUS full kitchen.  I highly recommend following the link I included and seeing if there is one in your area.
This is turning more into a rambling endorsement for the theater than it is a blog post*.  Let me see if I can bring it back around.  There are periods of our lives when our diseases and symptoms can make a social life hard.  But this has given me a new way to enjoy life.  And it is true what they say, the more you do the more you will feel like doing.  I recently went to a museum and park here in town.  I've lived here over a year and I'm just now seeing all the things there are to see.  I truly credit the discovery  of these cult classic showings (By the way, they also show Rocky Horror about once a month. No more waiting for Halloween!) with my being able to do simple things like just go to a park and lay in the grass. Or embarrassing my friend by forcing her to  learn how to do bell claps in a public park in front of heavy traffic.  (She did fabulously, I hope she's reading this.)
I'm not saying this theater is the answer for everyone who is having trouble getting out there even when they don't feel 100% (do I hear 30%, anyone?), but it was my answer.  And that means there must be an answer out there for you too.  I would never have guessed that there was a place out there where my ability to speak almost every line of a movie would be embraced. I would never have guessed that I would be there almost every week, and that I would find myself considering going out afterwards (I haven't yet, but I think I'm getting there.) So how do you find your thing?  I don't know. Look at what you love in life, and then try googling that plus the city you live in.  See what comes up.  Maybe there's a weekly meeting for people who once loved making those weird square lanyards at camp while watching Disney movies and want to rekindle the love.  If that's your thing, I don't know that it is, but I'm sure it's SOMEBODY'S thing.
To quote one more movie, which I totally think should be shown in the theater, "Baby steps, Bob."  Find your first baby step.

My Samoan Lawyer has advised me to
commit fully.
See, I totally brought that around.  It was planned from the beginning.

*If the Alamo Drafthouse people are reading this and want to cut some sort of deal, I am totally game.  

Friday, March 20, 2015

First wold blogger problems: "I have to blog in a separate app!"

I mean, truly, if that is what I have to complain about then I must be getting healthier. 
I'm sorry I don't update on here very often.  Here's the thing.
You may remember that I have a FaceBook Page, a Twitter handle, and a Tumblr account all for TheFaceofArthritis.  I can update Facebook and Twitter from an app called Hootsuite, which lets me write one post and submit it to both mediums.  And Tumblr is connected to Instagram, which means I can post directly from there.  
But Blogger doesn't connect to these things.  So I have to (exasperated groaning and sighing) open the actual Blogger app in order to create a post.  Which makes me feel like I have to write some witty mini essay to go with whatever picture or snarky comment I'm posting.  

So again, I apologize for leaving you hanging so much of the time.  But I do encourage you to follow our FaceBook page, Twitter, or Tumblr (remember that Tumblr is really only stupid pictures) for more frequent hilarity and hi jinks. 

Batten down the hatches, boys!
In the meantime, please enjoy this photo of my bunny (Harvey Ping) in a rain hat.  Because it has been raining for 2 days now and it seems appropriate.

Sunday, March 8, 2015

The bigger my ass gets...

... The harder it is to get it up and into gear.  But I've decided that #NothingTastesAsGoodAsNotBeingDiabeticFeels . It's my new motto: screw the "nothing tastes as good as skinny feels" bullshit.  A lot of stuff tastes better than skinny feels. But nothing tastes as good as taking care of your body feels. 

Don't take it the wrong way, diabetes is a legitimate problem and a lot of people don't have a choice in the matter.  But I DO. And the people who have a choice should make the right choice; especially if they already have plenty of other things to take care of on their bodies.

I owe it to myself- we ALL owe it to ourselves- to put as little extra stress on our bodies as possible.

Wednesday, February 11, 2015

Saturday, January 10, 2015

The difference a year makes

Almost exactly a year ago, I was struck with the idea to create a blog as an outlet for my daily experiences with RA.  I was in pain almost constantly, barely sleeping, living on prednisone (which probably wasn't helping the not sleeping thing),  and had virtually no life outside of work and sleep.  
Now, a year later, I have more good days than bad most weeks.  I go out to dinner with my husband, I can even watch a movie from beginning to end.  

This year, we are making our second cross country move.  At the end of next month we will be moving back to my home state of New Jersey, almost 1,200 miles.  Can you imagine??  We've only been here since July 2013, when we moved from North Carolina.  

The Road so Far...
At least this time I won't be packing a whole apartment by myself- that was a little stressful.
So now, if I can keep myself on track to write when I'm supposed to- you guys should be in for some interesting experiences as we make ANOTHER ridiculously long move!

Friday, January 9, 2015

Introducing.....

the new look, logo, and lifestyle for Face of Arthritis, which is supposed to, in the spirit of  New Year's resolutions make me actually take care of this blog for you all and for me.  Tell me what you think of the new look?  If you like the look maybe I'll revamp the text to match.
K